Personal Reflections on 15 years of mainstreaming – Achievements, the unfinished business, the next steps By Des Kenny

Former CEO of the National council for the Blind of Ireland (NCBI) and Chair of the umbrella body the Not for Profit Business Association delivered at The National Disability Authority annual conference – Dublin, October 12th, 2015

I am pleased to share with you some of my reflections not just on the last 15 years but coming out of the longer period of my engagement with services for people with disabilities. I was more than a little concerned to think that I might have to tie my reflections just to the past fifteen years. My concern arose from my belief, through experience, that the pace of change is very slow and sometimes imperceptible; and that change is more generational than it offers to us highlights of success to be validated in as short a period as fifteen years.

I will, of course, touch on, in course of my presentation, the significance of what I think each one of you and the National Disability Authority bring to the mainstreaming and inclusion agenda. I know it might be nice to record that this policy, as we now know it, started in a formal way only 15 years ago. I would contend that it is of an older vintage of at least sixty years, and that is promising, in that it has roots established already out there in the community. I will be reminding you to look for those roots and not to envisage a brave new future as a parallel to what already exists if you only look for it, regard it and build on what you find out there in current main-streaming and inclusion.

With your indulgence, I am going also to include extracts from two of my poems to help humanise a difficult subject in the abstract. I hope these will give a personalised sense of me, managing an inner hurt and depth of loss which journeyed with me (and I suggest also with others with disabilities) along our way to acceptance and to inclusion. I am working on the anticipation of your indulgence because you will tolerate at least one quirky presentation in the midst of the cumulative wise and excellent presentations of this morning and to be given after lunch.

Take these five lines of a short poem (“Words Form the Lie”) to imagine how a spider can survive without its web or how migrating birds would survive if a staging post in the ocean were suddenly to disappear, denying them the promise of temporary respite and recuperation. I will return to this poem with the request that it be used as a test of our understanding of and commitment to mainstreaming:

Words form the lie, the pretence

Of normality when hunger’s pain

Is the webless spider’s fate,

And a lost Atlantis

Keeps exhausted birds in flight.

What I want you to reflect on, by way of question, as you listen to or later read this presentation:

Is it time to join goodwill to a little more anger and agitation to provide some more momentum to the change process?

The speed of change is greater where it is generated out of a need to appease anger in public protest and/or strenuous lobbying. I received a free €100 last week into my bank account because of the protests around Irish Water.

Change through goodwill is always slow, patchy and often not to survive beyond its goodwill champions unless handed down again to new champions. All of you, in this room, and individually, are champions. You can be a force for change to be reckoned with but will you need to become more impatient with the status quo and angrier when promises are slow in being met? I say “yes” to that question, in answering for you.

During my span of years, I consider myself to have been most fortunate in having been able to live on the sunny side of the street of opportunity. There a combination of good fortune, luck and numerous supportive non-disabled fellow-travellers have accompanied me on my journey right up to my retirement last year. Some of you fellow-travellers are here this morning and, I believe all of you can in different ways travel with other people with disabilities down the coming years and decades. Listen to the impatience and use it to reduce the length of the journey and the time in achieving change.

A short Biographical piece to set a context:

My early childhood years were spent in Newbridge, county Kildare. This was and is a town whose industry is built on rope and cutlery factories, and on the edge of the Curragh military camp and the racing industry of stables foraging for labour into the town and its council estates.

There was no way to continue education with blindness in local schools in the mid-1950s. A residential school in Dublin was the Hobson’s choice for my parents who, in some ways, looked on that place as a “special” milieu that would confer new rewards on them and on me. That God is good can lead, in the minds of humble people, to a belief that where He closes one door many more doors are opened up by a benign God to new opportunities.

That heady cocktail of beliefs and trust in “special” and a reliance on professional care to compensate for the loss of the ordinary is still the narcotic of optimism which many parents, like my parents get hooked on today (even sixty years later). This happens to them when they entrust themselves and their children to compensatory services in special places in doing the best to make up for difference which takes many forms in types of disabilities.

My early and formative years attending a residential school in Dublin separated me from my family and local community. I became a visiting guest to my own family and a conversation piece for the neighbours whom I never really got to know. Being deprived of the interactive relationships of play and growing up as a teenager lost for me a sense of belonging and ownership in that community of which my parents and family were a part. I would have to find a new belonging and identity elsewhere in my late teen years and into my 20s. That managed separation has a similar consequence for everybody regarded as being in institutional care today.

A poem I wrote to capture that dual separation from family and place I called

“A-Not-To-Be-Forgotten-Journey.

The first six stanzas of the poem convey something of the turmoil in the mind of a nine-year-old child when being torn by circumstance from family and home:

I’d not forget that Saturday,

Snow flurrying, cold,

When I gripped, clutched, my mother’s hand,

Holding in my tears,

Starting together on new ways:

Me, to my loss; she

To her confronted, letting go:

Alone, while sharing,

That Saturday separating

On a country bus,

Routinely scheduled,

On its leaving to Dublin way.

Destination’s green link of place,

This bus, carried me, taken,

From squealed hoops of playtime laughter

Beneath trees in fields

Of exploring, dawdled wanders

In, what was for me,

My whole world – a small midland’s town,

In another time –

All left behind as I journeyed,

(Bus taken) tearful

To a remote place

And a lonely, forever stay.

(There are a further six stanzas of the same which you might like to read at your leisure).

To belong in a community depends on visibility and participation.

Participation must exist in and at the different levels where people form communities in education, work, recreation and politicised representation as part of trade unions, resident associations and even political parties.

– Active with my local branch of the Labour party in the local elections of 1974

– Managing the trade union affairs of the sheltered workshops for the blind, and

– Differently involved in literary and cultural groups.

It hasn’t been easy. The energy consumed to maintain and to develop my inclusion and right to be equal in participation has been draining at times and has presented colossal challenges for me.

A Slow Evolution:

Because I can span sixty plus years in my journey through life with a significant disability, I can pick out the milestones of progress I have passed along the way. Everything has come by a slow evolution: Integrated education has replaced the special schools. Meaningful workplaces have replaced the sheltered workshops and sub-assembly units of monotonous, lowly-paid work. Technology has opened different and new avenues to previously thought lost destinations in education and work. A more accessible and user-friendly environment has restored independence and given physical admission to transport and the public buildings where people interact in their relationships as social and cultural beings.

I suppose what I am saying here is that change did and does take place but that change is a very slow process, and it is more attainable when pursued, as in my time, by groups which were representative of people with physical and sensory disabilities.

Future change for people with all forms of disabilities must be driven by committed champions who share a common dissatisfaction with elements of present services and who are prepared to commit to the uncertainties of a new future.

This challenge belongs to the families of people with intellectual disabilities to be more pro-active in advancing the pace of change for the family member for whom they desire a life with higher respect, independence and with control of their own affairs. We with physical and sensory disabilities now spend more of our time looking to Brussels in building new forms of inclusion in the many directives coming from the Commission which we can influence for new rights.

The logic of mainstreaming and inclusion should be built upon norms of participation and not the sham perceptions of sharing spaces and attending the rituals that surround learning, recreation, and/or pursuit of leisure. Nor should inclusion be seen as a fixed point of arrival. New horizons present themselves to people when they arrive at what others might think to be a conclusion.

Here, in Ireland, we are still making advances in bringing our public transport services into being more accessible. In Europe, disability groups have won new rights when travelling as passengers by sea or by air.

The inertia of the Status Quo:

I know that government policies and NDA advice papers do much in challenging traditional mind-sets. But all sign-posts to change point to a journey which has to pass through the inertia of the status quo which is protected out of fear of the unknown. There is a fear of the possibility that the destinations being mapped out for a new inclusive form of mainstreaming is not built on other than the bedrock of an economic ideology.

An ideology which is fashioned out of an imperative to save money than it is formed from the philosophy of breaking down barriers to inclusion. It is not always seen as offering sustainable ties for people with disabilities to the morass of society in its formal and informal congregations.

Inertia is not unique to our efforts in advancing change and in being champions of reform. Inertia is to be found everywhere as a hawser tying us to the dockside of the present. Saint Thomas Aquinas is attributed as saying

“If the highest aim of a captain were to preserve his ship, he would keep it in port forever.”

If for “preserve his ship” we were to see it as preserve our Care” we could see it as something that is conservative and majorly averse to risk outside of our own port of experience.

“My education sought by protection to make me innocent rather than through practice virtuous” – John Ruskin.

John Ruskin was a social thinker who lived in England in the 1800s. I picked up this reflection of his on the inadequacies in the approach to his own education when in my more formative years.

This quotation (like that of Aquinas) could be seen to re-enforce the need to be brave and to allow people to take risks.

A Personal Worry:

I must now say something that worries me about something I detect in the emerging policies in dismantling congregated settings and in how we view independence and control.

The congregated settings we are working to change are those which diminish individuality and self-control. However, in looking to change, we sometimes may not allow that people with disabilities might like to live and to mix with other people with disabilities. We should not be surprised that in having one’s own private room in a house shared with a number of others is preferable to living in a self-contained apartment. Which of us really want to live on our own?

Independence can be hard to sustain without the company of others who create the social dimension which is built primarily upon sharing and on friendships. That to want to be alone sometimes in one’s own private space is normal and should not be represented by bodies such as HIQA as a failure in an individualised care plan. Equally, we should not readily reject forms of group living which are small and which offer companionship.

There are many challenges in changing congregated settings. But, I urge you, let the transitions take various forms of evolution as people grow in their own empowerment and capacity of exercising control over their lives to how they want to live and not in how we think they should exercise the independence we want to give to them

Barriers and Next Steps:

The NDA has an important role to play in ensuring that the momentum to inclusion and mainstreaming is maintained if even at a pace which we would like to be quicker. The degree of inertia in existing services to achieve transformational change should not be under-estimated. Nor should it be surprising that some ID service providers will attempt to create a parallel system to employ their staff in new community inclusion roles.

“special” is a most dangerous description which can as much imprison people as it can liberate them. You will see people with “special” tags such as “special needs assistants” being fought for to preserve the symbolism of extra forms of assistance. Personally, in this particular instance, I favour Class-room assistants over one-to-one adult attendants in the class-room. I see SNAs as being potential barriers to inclusion and the development of independence in the individuals they support. Personal assistants are a different matter and are genuine facilitators to exercising independence for people with disabilities.

Society and the community will never have arrived at a perfect level of evolved maturity that will satisfy people having reservations about de-congregating “vulnerable” people into new settings in the community. Don’t let people over-use that word “vulnerable”. It is done to create in us a sense of guilt when we take brave steps to let people grow in their independence exposed to some levels of risk.

A Right’s-Based Future is the Best Future:

Our Disability act has been a disappointment. It started to wilt after the first term of sectoral plans failed to set targets. The UNCRPD and its ultimate ratification in Ireland will offer a chance for again accelerating change. That change will also slow in time as it fights against the inertia to translate the change journey to be one without the caravan of experts, specialists and bag carriers who will want to travel with us in disproportionate numbers to ensure that they enter the Promised Land to set up a different form of the same minding and caring institutional care we are trying to leave behind us.

That said: Don’t under-estimate or have devalued your own powers to unblock the ways to new horizons of promise. You must be the fellow-travellers for other people with disabilities whom I needed and found to travel with me all of those years ago.

In conclusion:

Change evolves slowly. Much of the infrastructure of community supports which persons with intellectual disabilities will need are not too dissimilar to what people with physical and sensory disabilities have created around us in our mainstreaming and inclusion. They are there and they already exist in good measure but can be enriched by means of additional funding. There is no need to create a parallel inclusion for persons with intellectual disabilities. Of course, there are differences but they are less special than you will be led to believe.

And now to end with my lost Atlantis and the hungry spider:

Words form the lie, the pretence

Of normality when hunger’s pain

Is the webless spider’s fate,

And a lost Atlantis

Keeps exhausted birds in flight.

It is a conundrum in which persons with disabilities live – hungry for love and friendship and in the quest for magical islands to rest on in their journey to independence. Can you help feed the hunger, and allow that magical island to exist?